19. Nightmare Time

19. Nightmare Time

These are the times that try men’s souls. I’m sure I heard that somewhere… Just kidding!

So this is how bad it’s getting. Sorry if it brings you down, you need to know to understand the rest of this book if I finish it.

Just got back from UCSF with my son Barak. Dr. Goodin wasn’t there so I got to see Dr. Crabtree. (Terrible name, but one sharp woman…) She agreed that it was most likely that the self diagnoses I had made of suffering from PRMS (Progressive Relapsing Multiple Sclerosis) was correct. Here’s why:

1. PRMS tends to hit older males
2. PRMS tends to hit those with spinal compression (Did I mention that mine was compressed to 1/3 of its normal size?)
3. PRMS is characterized by early depression onset
4. PRMS is characterized by early cognitive dysfunction (Before many lesions appear.)
5. My cognitive dysfunction continues to deteriorate absent a relapse.
6. My balance continues to deteriorate absent a relapse.

I’m sure there’s more I’m forgetting, but the above is enough. To give you an idea of how bad it’s getting:

After we got home, I went to turn on the computer, and noticed that my computer glasses were missing. I remembered that I had left them hung on a specific curtain in the RV. Proud of having remembered this, I got up and walked the 40 feet or so to the RV. By the time I got there I had forgotten why I had gone. What was I looking for? I couldn’t remember.

No problem… Happens all the time. I just retraced my steps, sat down in front of the computer and was reminded that I couldn’t view the screen without my glasses. Right! My glasses! I got up and walked back to the RV. By the time I got there I had forgotten why I had gone. What was I looking for? I couldn’t remember.

“This is ridiculous!” I thought to myself. “I should probably look in the driver’s seat. Maybe I’ll see it…” And damned if I didn’t! There they were… The Iphone headphones I had forgotten to bring in… Ha! Got them….! I proudly returned to the office bearing my prize to sit in front of a fuzzy screen…

“Shit! My glasses!” I realized in horror what had just happened. “Not this time!” I said to myself. This time, every third step I said the word “glasses” out loud. When I got to the RV I went straight up to the curtain and retrieved my glasses. I felt a little silly doing it, speaking out loud like that, but I really didn’t want to forget them three times in a row.

My “drunken sailor” routine continues to get worse. Bob made me switch to running shoes instead of my comfortable but supportless Uggs. Barak said my walking looked better as a result, and I was gratified to hear that. I still almost fell a few times today for no apparent reason.

At least I can still drive as long as all I do is drive. I have a new rule since being pulled over by that cop. From now on if I want to do anything other than drive I pull over first. That includes adjusting the radio, Iphone, whatever that requires me to take my eyes off the road for more than a fraction of a second. I’ll still look quickly down to check my speed, but that’s it.

Anyhow, this is how it is. I called my father, desperate for advice. What should I do? Keep on keeping on and hope nothing happens? Stop driving altogether and treat myself like an invalid?

His advice was to start writing and sticking to a daily schedule, checking off items as you complete them. He said he’d been doing that for years and it really helped him. Don’t forget, he’s 93 and still writing books!

I asked my wife if she would help me do this and she said “Of course I will…”

No surprise there. She’s been after me for years to make lists and follow them. I’m not really sure why I have resisted so much until now. I guess it kind of makes me feel like a prisoner. But I have to remember that I’m just being a prisoner to myself at this point. That’s not even possible, is it?

The last question was whether I was suffering from subcortical dementia. Not all PRMS sufferers get it, though some do. I asked the doctor how one found out and she told me there was a battery of unpleasant tests one needed to take. I told her to schedule them for me and hope to find out a date next week.

After all this, I’m supposed to find equanimity. I’m working at it. There’s no doubt that the writing helps. I guess putting pain on the page makes you feel better because it’s shared. That makes no sense, I know, but we’re talking human neurosis here!

So, to who ever ends up reading this. Thank you for sharing my pain. I feel better already.